Doctors must not have the final say in the survival of sick children

Doctors must not have the final say in the survival of sick children, as the case of my brother Lorenzo showed

By Cristina Odone

Doctors at the Great Ormond Street Hospital are as close to God (or at least angels) as you can get. They save children's lives on a daily basis, have been the subject of sympathetic documentaries (as opposed to horrific "Panorama" investigations) and are generally seen as a pillar of strength at a time when we feel our most vulnerable.
So when they issue statements, everyone listens. Their latest hits out at parents with any kind of faith: their religious beliefs, the doctors claim (and a hospital chaplain agrees), condemn their child to torture.
In an article in the Journal of Medical Ethics, a group of  GOSH doctors write a review of 203 cases at the unit in which parents were advised that life support systems should be switched off.

In 17 cases, the parents insisted on continuing treatment even after lengthy discussions about the probability that it would be unsuccessful. In 11 of these, religion was the main factor influencing their decision. Some of the cases were eventually resolved after religious leaders persuaded the parents to allow the child to die, and one case went to the High Court. In the remaining cases, no agreement could be reached because the parents were awaiting a “miracle”.

The doctors argue that subjecting children to suffering – for instance, being condemned to a life attached to a mechanical ventilator – with no scientific hope of a cure could breach article three of the European Convention on Human Rights, which prohibits torture. The GOSH medics want to be able to withdraw treatment more quickly, and for the courts to allow this, parents’ beliefs should no longer be seen as a “determining factor”.
The doctors are not talking about Christian Scientists here, who ban any kind of medical intervention (from blood transfusions to organ donations) for contravening God's plan for us. They're talking about the faithful, who pray and pray at their children's bedside, hoping for a "miracle" cure.
Are these parents' hopes and prayers to be quashed because doctors know best? If they did, that might be an argument in their favour; but too many times they don't. I have seen first-hand how several doctors' prognosis was completely disproved; when my half brother Lorenzo was diagnosed with Adrenoleukodystrophy (ALD) the medical experts were unanimous that my parents should resign themselves to his death, within a year, maximum two.
Instead, my parents believed in miracles – in this case, of their own making. They studied every experiment that dealt with the myelin sheath – the bit of the brain affected by ALD – and discovered a therapy that had eluded the scientists all along. "Lorenzo's Oil" may not be a "miracle" cure: it cannot restore functions where they have disappeared. But it does prevent the majority of pre-symptomatic children from developing the dread symptoms. That's pretty miraculous, most parents would agree.
If my parents' story is exceptional (enough to be turned into a Hollywood film) it is not the only time that parents' prayers have triumphed over doctors' prognoses (and that's when the diagnoses are correct, which is not always). Doctors don't like this kind of miracle, though. It shows them up. The only miraculous cures they believe in, or will tolerate, are those of their own devising.
If my child's life were threatened, I would try everything the doctors suggested – except for giving up hope.